Calling all TNs
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ksmatthews - thanks for the encouragement! I'm still trying to learn the lingo -- what's TAC? I didn't see that abbreviation listed any place.0
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For sure, we don't know....and it makes sense to enjoy each day we have!
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BernieEllen- I too experienced 2 deaths within the past year (a heart attack and motor vehicle accident) it happened so fast. As you said we are all here for a limited amount of time; make it count. I strive to be an old lady one day, but that's really all I can do is speak it into my future.
Thanks LuvRVing, it really puts a twist on the whole thing it really doesn't matter whether you are +/- I guess what really counts is did the Chemo or whatever treatment option you took worked.
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TAC= Taxotere, Adriamycin, Cytoxan
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Bernie and Fighter, I'm so sorry for your losses, it's difficult to deal with the loss of one person but multiple loved ones is terrible.
CharB22 - I'm sorry you have to be here but I think you'll find this thread to be one of the most helpful.
DH = Darling Husband I believe, at first I thought it meant Divoiced Husband. LOL
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Again, thank you all for this great thread. I'm having a tough time wrapping my head around this triple neg thing. I thought for sure that I was ER+, would have only radiation, and be on my merry way. Oh well. I can only say that I am grateful that this crap has not gone to my nodes -- the office mgr in my PCP's office - who I LOVE - said it was my Christmas Miracle. And, she's right.
I've decided that since I don't go to oncologist until Jan 4, I'm going to try to focus on non-cancer stuff as much as possible. Although I do need to schedule an appt for a haircut. I'm going to chop off my shoulder length hair to ease my way into the hair loss.
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CharB22, I agree, "Crap" I'm very sorry that you are joining our club. When I got my TN diagnosis, I had no clue what that meant. I'm still learning. Good news on the nodes! Angry and scared? Me too!
Phyllis
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Ha ha on the "DH" stuff...I thought it was dear husband..or "dick" husband when I was pissed off at him..I guess it just goes with whatever you are feeling at the time.! I hope I didn't offend anyone here..
Hey..Phyllis and Char..welcome to our (your) TN thread...My SIL (sister in law) has er/pr positive cancer..her onc told her it was the "best" cancer to have..yes..to my face...my family is kinda a competitive bunch...so I like to remind her that though triple negative's have a higher chance of reocurrence in the first 3 years it goes way below the positives after that ..so there...it's hard to be nice sometimes when you have breast cancer...
Geesh..we all have cancer for gosh sakes...
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About the moving on thing..once you are done with treatment...it's a process..it takes time...there are so many mental and physical aspects that you have to deal with...don't expect to be your old self right away...it takes time to wrap your head around the whole experience plus trying to get your body back to normal...You have had very, very strong drugs infused into your body...plus dealing with the mentality of a cancer diagnosis.
Yeah..we do have to realize that we may not be cured until we die of something else..but who wants to wait for that...????
Hang out here...I love hanging out here...it's my connection to what happened to me almost 3 years ago...I can't just forget it..no way...but I can put "it" in box and forget about it for awhile..and you all will too...
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Well said Titan. I feel the same way. I just can't forget it but I have moved on and found a way for it to fit in with my life. I don't dwell on it but I'm glad I have this place to come and vent, lurk, or whatever fits at the time.
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I saw my BS today for a follow-up (12 days out of LX surgery). I am dealing with a BIG hematoma which has me swollen and sore. It went all the way over to my breast bone and up toward my collarbone as far as it could go, then starting swelling out since it ran out of space. Has anyone else dealt with it? It is all black & blue. It happens all the time after surgeries to me and one time, I had to have emergency surgery to clean out the hematoma before it did damage. My BS just said to put ice on it which doesn't seem to do much. He said he might try to "draw out" some of it if it liquifies in a few weeks, but right now, it is rock hard. That sounds pretty painful. I might decline that even though it might take longer to re-absorb. My BS is also going to have me tested for Von Willebrand disease which is a platelet disorder. Anyway, I thought I would ask if anyone had any good ideas for getting this to heal?
On another note, I asked my BS for the path report from the surgery. I read it tonight when I had time and was surprised/shocked/frightened when I found that it said there was another mass that was 0.5 cm!! No one mentioned this. When and where did that come from? It said it was tan/white like the other larger mass but didn't say if it was tested. I had mam, breast mri, ultrasounds, PET and CT and no one said anything about another mass. It also said that he had to go back in to get clean margins on two sides and took some pectoral muscle as well, which I thought he said he didn't take any muscle. So, did this mean it went into my chest wall? It wasn't in my chest wall two months ago when I had the us. I have all these questions flying around in my head now. I was upset enough that it took 3 months to get to the point of surgery and the 1st(?) mass over doubled in size. I guess I will have to call tomorrow as I feel very uneasy. If no one saw that second lump, could there be more lurking??
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Cat sorry to hear about all that, I really dont' have any advice but to call your onc and have them explain. I never asked for my path report after surgery.
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Yes I agree, well said Titan. I especially agree with the different meanings of "DH".
CatWhispurr - My surgeon also had to cut into the muscle. I have the same questions as you, but I think that maybe I don't want to know what his answer would be.
Tomorrow will be 2 years since I had my biopsy. At that time the Dr. looked very concerned and put his hand on my shoulder and said "Good Luck to You", I thought that is certainly strange, Merry Christmas would have been more appropriate, Oh well, maybe he doesn't celebrate Xmas. Talk about someone being in denial!!
On the topic of alcohol, I have orders from the Dr. to have a glass of wine over the holidays, Yeah!. Love this guy, he always puts things in perspective and when you leave you feel like everything is going to be O.K.
Char B22 - sorry you have to be here. All of these ladies are wonderful and we will be with you every step of the way.
Heidi - Thank you for the laughs.
Kim
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Heidi and all, I agree it is possible to move on. I did the first time I went through this crap but it took me about 3 years. Not to say that I did not live my life those first 3 years, but I had major anxiety and panic attacks until I was put on an antidepressant. The year or two before I was diagnosed for the second time I really started to plan for my future again and relax about cancer, and then bam! Diagnosed again. It really sucks a second time, especially with a diagnoses that is much worse than the first one. I just hope I learned from the first time and work on not worrying about it, as it won't change a darn thing. When I am finished with all the treatment I just want to enjoy life as best as possible and still reasonably plan for a future, you never know, it just may not come back and that is what I need to focus on! I will still visit here. Right now I need to focus on healing and getting through rads, which start next month.
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Hi all,
Just found your thread. I was diagnosed at the end of Febuary at 47, had a MX in March did 6 months of chemo, 4 A/C and 12 Taxol and am just finishing up 30 doses of rads. Now that I am finally finishing up treatments I am learning a little more about what it means to be triple negative. I don't think my brain was ready to deal with it before then.
Has anyone been told not to drink now to help decrease recurrence? When chemo ended and my oncologist gave me the ok to eat raw veggies again she said that I could drink in moderation too. She defined this as 1 or 2 glasses of wine a day. Now that the holidays are here I find people offering wine at every event. I've had a glass or two but can't help but worry it is not a good thing. When I researched it I found articles saying drinking was linked to recurrence but it usually mentioned it in connection with estrogen.
I think I'm just starting to worry in general now. After seeing a docotor constantly for almost the entire last year the prospect of not having some sort of treatment makes me feel like I'm not doing anything to be sure this is gone.
My next worry topic is sugar...but I think I'll let that one wait until after Christmas.
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Titan i so agree with your way of thinking.
Cat so sorry you are having a difficult time. Thinking of you and Bak.
Hi nans, i do have my red or rose wine. None of the doctors here have a problem with that. Just take it easy and enjoy yourself.
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Well, I continue to come here for the obvious support, and that won't change. But I also come here to try and help others educate and advocate for themselves. Far too often I see women just blindly follow their protocol, even when they have concerns, and I want to encourage them to speak up, to know that it is okay to question - it isn't the doctor who's life is on the line. If I can help even one person, then my hanging around here is worth it. I never want to scare anyone with my story, just inform.
Heidi - I can very much appreciate where you are in moving forward, which makes what you do even more awesome. Dropping by with a lighter spirit is sweet and thoughtful - and hopeful for all newbies.
I am sorry to have to welcome all new women, but I hope you'll find this thread informative, supportive, and what YOU need it to be. And if that is a soft landing spot for a year, than that is perfect!
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Suze, I have to say while I was going thru treatment and posting questions or concerns you definitely had / have a way of answering and calming my nerves. You have most definitely helped me get thru some pretty rough days. As all of you have, really. Thank you to all of you.
ksmattews, glad to know you didn't ask to see your path report either. I got a brief glimpse of mine while my first Onc was going over it with me in super speed broken spanish and during a very high anxiety moment. The most I caught out of it was the additional 4mm of DCIS that was a suprise and I'm 8 out of 9 on that scale we talked about earlier. That's more than enough info for me. Right now I need to focus on the "clear margins and no node involvement"
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I think it is VERY important that you have your path report and understand it. You can request copies of it and you have the right to have your physician (either surgeon or oncologist) explain it to you. I have copies of every report or consultation that a physician has completed on me. It is also nice to refer back to when your mind is a little slow!
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catwhisperer: My onc went into my chest wall as extra preventative insurance against recurrence. I hope that's what your BS did for you, too.
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Survivor2Be - I couldn't agree with you more, my problem is my intense anxiety. The moment my onc starts talking about anything related to my BC, I panic and have little meltdowns. My onc doesn't hold back, if there is info he feels I must know he will tell me but info like my chance of recurrence rate, I don't need to know that info. I'm doing everything I can now, if I knew the number my anxiety would probably kill me. I will not go to any doctor appt now without first taking a xanax. I'm sure they are all very happy about that too
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Hmmm.... I didn't mean to imply that I had "forgotten" about BC (as if that's possible). I have *compartmentalized* BC.
That is to say that my fears no longer control me; I control my fears. In fact, coming in here is what sets off the remaining fear I have.... especially when I read about those who have recurrences with similar Dx to me, or those who recur well beyond the magic 3 year period we all strive to achieve. That just scares the crap out of me, but there is one critical difference in my demeanor now vs. 2 years ago:
I *choose* to come here for reasons previously stated, I don't *have* to come here out of any fear-based motive. So, that gives me control over my fear, and that works for me.
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Hi Girls, my goodness it has been over a month since I last wrote. Just to let you know that everything is still okay. I am working,going to school and volunteering with the new BCpatients at San Antonio Hospital. I enjoy meeting them and trying to give them some hope. I want to wish you all Happy Holidays and that the New Year continue to bring better news for all of us. Thank you my TN sisters for always posting and comforting and encouraging each other. Here is a big ((((((HUG)))))) from California.
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PS- so, FWIW, how do I control that fear when I come in here? I remind myself that cancer is a crapshoot, that's how. I firmly believe that the reasons people survive or don't survive is due to genetic differences not yet understood by medical science and, that being the case, it is totally out of my hands.
Then I go have a drink and a piece of chocolate.
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mccrimmon324 - I also take a Xanax before each doctor visit. LOL. I was just diagnosed yesterday with the dreaded triple negative, so I'm trying to learn as much as possible without scaring myself silly. I have a copy of my pathology report and my parent's have a very good friend that is a pathologist. I'm going to have him explain it to me at some point (after I pop a Xanax!!).
I had a lumpectomy before I knew I was triple neg. I haven't gotten the BRCA tests done yet either. I almost wonder if I've done this backwards. Should I have gotten the BRCA test first and then opted for the double mastectomy instead of lumpectomy? I'm meeting with oncologist on 1/4 who is also the genetic liason to the cancer center. I want these puppies off if I test positive. Can I do that after chemo? Or was it good to get that little bugger removed so it wouldn't spread? It was only 1.2 cm and no node involvement, which I think is a super big postive. I keep 2nd guessing myself and it's making me crazier than I already am!!!
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Char - I didn't know about my TN status until after surgery either. In fact I was so rushed thru everything, no one offered a choice of lumpectomy or MX. I switched oncologists after surgery and my current onc will be doing th BRCA test on me. If I come back positive I will be having a MX and yes you can do it after chemo but you'll have to wait until it gets out of your system. My onc said it's actually more important to have your uterus and ovaries removed as your move likely to develop that type of cancer too. I guess the one thing I have certainly learned is STAY OFF THE INTERNET, both my husband and I made ourselves sick reading about TN. I mainly stay on this site only now. These ladies were quick to point out that most of the internet findings are outdated and TN usually responds very well to chemo.
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I agree with mccrimmon32, Stay off the internet!!
What is a BRCA test? How do I know if my dr's checked me for this?
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ks- the BRCA test is a blood test that determines if you have an inherited gene that causes breast cancer and possible ovarian. There is BRCA 1 and 2- so far these are the only two that have been identified. Most TNs (but not all) who turn out BRCA positive are BRCA 1. This is something you might want to ask your onc about. If one is positive it is usually recommended to have a double mx and remove both the uterus and ovaries. I had it done and was negative on BRCA 1 and BRCA 2 came back with a "variant of unknown significance" which basically means there is something different on that gene, but it is not known if it contrbutes to breast cancer.
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Char - I had chemo first and then BMX surgery, and I didn't have to wait that long in between. My last chemo was on 12/30/10 and my BMX was on 1/8/11. So you have lots of options available to you. I'll be thinking of you as you begin treatments and I hope it goes by as fast for you as it did for me. Just take it one day at a time! You can do it.
All - I'm scheduled for a PET this Thursday due to raised ALP level in my blood from last week's 6 month followup with my ONC. I can honestly say that this is the first time since my original diagnosis that my anxiety level is through the roof. I'm a positive thinker all of the time, but I just can't get the "what if" out of my mind. I should have my results back on Friday, which will be great if the news is what I'm praying for. I have had nothing but good news since I started treatments 15+ months ago. So I wasn't expecting that call back on Friday to say my blood work was off. Has anyone else had elevated ALP levels (normal is 50-136 and mine is 152) and had it NOT be issues with liver or bones?
Thanks for all of the past and future support. Love this place!
Kathy
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